| Title |
Assessing narcolepsy with cataplexy in children and adolescents: development of a cataplexy diary and the ESS-CHAD
|
|---|---|
| Published in |
Nature and science of sleep, August 2017
|
| DOI | 10.2147/nss.s140143 |
| Pubmed ID | |
| Authors |
Y Grace Wang, Khadra Benmedjahed, Jérémy Lambert, Christopher J Evans, Steve Hwang, Jed Black, Murray W Johns |
| Abstract |
The aim of this study was to qualitatively evaluate concepts for incorporation into a daily diary to capture cataplexy frequency and to assess the content validity of the Epworth Sleepiness Scale for Children and Adolescents (ESS-CHAD) in pediatric patients with narcolepsy. Face-to-face concept elicitation and cognitive interviews were conducted with children (7-9 years; n=13) and adolescents (10-17 years; n=16) who have narcolepsy with cataplexy, and their parents/caregivers. Similarities and differences were noted between narcolepsy concepts described by children and their parents/caregivers, suggesting some different but complementary perspectives; parents may not recognize cataplexy symptoms/triggers as well as children, but parents have greater recognition of the circumstances of falling asleep. Cataplexy diary modifications included changes in definitions and examples of cataplexy, using child-friendly terminology, adding a quantitative question to determine daily frequency, and standardizing the questionnaire for evening administration with self-completion by the child. Modifications were made to ESS-CHAD for child-friendly wording and to ensure that items reflect activities (eating, watching TV/video) and environments (school, bus/car transport) in which children are likely to participate. Two ESS-CHAD versions were proposed: one with a 1-month recall period, for general use, and the other with a recall period of "since your last study visit," for research, which could be shorter or longer than 1 month (as short as 1 week). The cataplexy diary and ESS-CHAD were modified for the assessment of children and adolescents. Further psychometric validation is recommended. These measures are being used in a Phase III, placebo-controlled clinical trial of sodium oxybate in children and adolescents with narcolepsy. |
X Demographics
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Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 1 | 100% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Practitioners (doctors, other healthcare professionals) | 1 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 46 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 46 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 6 | 13% |
| Student > Postgraduate | 5 | 11% |
| Student > Master | 5 | 11% |
| Unspecified | 3 | 7% |
| Professor | 2 | 4% |
| Other | 9 | 20% |
| Unknown | 16 | 35% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 12 | 26% |
| Psychology | 4 | 9% |
| Unspecified | 3 | 7% |
| Nursing and Health Professions | 3 | 7% |
| Social Sciences | 2 | 4% |
| Other | 6 | 13% |
| Unknown | 16 | 35% |
Attention Score in Context
This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 18 August 2017.
All research outputs
#17,438,425
of 25,584,565 outputs
Outputs from Nature and science of sleep
#437
of 629 outputs
Outputs of similar age
#210,251
of 328,005 outputs
Outputs of similar age from Nature and science of sleep
#4
of 6 outputs
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